After graduating from medical school in 2018, I had an experience that led me to feel shame upon recognising that I could not communicate with patients from their perspective. Patients with chronic or asymptomatic diseases, including hypertension, diabetes, and dyslipidaemia, sometimes say, ‘I do not want to take medication’. Although I explained the diseases with a pamphlet or consulted with a nutritionist to change their lifestyles, these tools were sometimes ineffective in controlling their disease, and I had to start medication instead. The patients often asked, ‘Will I have to take this medicine until I die?’ I usually replied, ‘You may quit taking medication when you do not need it, but it will take a long time or never happen in most cases’. They began to take the medication eventually. However, I felt it was difficult to treat patients who refused or were reluctant to take the medication. I was unable to consider the individual reasons why they did not want to take drugs or improve their habits from their perspective. Moreover, I had not realised that changing their habits would deny them their previous ways of life. However, my experience with one patient changed my understanding.
A patient with X-linked hypophosphataemia (XLH) presented symptoms related to XLH (1). XLH is a genetic disorder that can cause a lifetime burden. The patient was prescribed phosphate and active vitamin D; however, her adherence was poor. Therefore, I had trouble managing her persistent hypophosphataemia and had to do something to address this issue.
To understand why the patient did not take the medication, I utilized the Calgary-Cambridge Guides, which present useful skills for effective communication with patients. They consider not only the medical perspective (disease) but also the patient perspective (illness) and background information, leading to shared understanding and shared decision-making (2). In these guides, the patient’s feelings, concerns, ideas, beliefs, expectations, and effects on life are included from the patient’s perspective.
My patient with XLH had intractable back pain and stiffness in her trunk and extremities, which limited her movements in everyday life. Her mother and sister had exhibited similar symptoms. In addition, the patient was approaching the age when her mother had died of subarachnoid haemorrhage, and so she also experienced anxiety and fear of death. She expected her symptoms to ameliorate with treatment. I asked her why she was unwilling to take medication and found that she had avoided artificial substances, including drugs, because of her family’s beliefs. I could empathise with her struggle. Therefore, I proposed a subcutaneous injection of burosumab every four weeks as an alternative treatment option to reduce the frequency with which she took the medication, and she accepted this treatment.
This method allowed the patient to share her experience and perspective and strengthened our relationship, leading to a tailored treatment. I thought that this experience could be applied analogically to patients with other diseases who do not want to take medications or change their lifestyle. Upon reflection, I feel ashamed that I had been unable to communicate effectively with my patients because of lack of knowledge and skills.
Let us now consider the reasons for this problem. It is possible that I lacked the ability to recognise my patients’ feelings. I have mainly studied the biological aspects of medicine in medical school. I can hardly recall a time when I was taught how to treat patients with communication challenges, including those who did not want to follow the doctor’s suggestions. Behavioural science may help us understand patients’ perspectives, but the medical school from which I graduated did not include a structured behavioural science curriculum at that time.
Because I am interested in molecular biology, I obtained my Ph.D. by studying the functional role of oxytocin in ovarian physiology. Therefore, it is natural for me to regard biological science as the centre of medicine. As an ideology, biological science can explain what is hypothesised as logical. However, nonlogical aspects, including the relationship between patients and doctors, have never been explained. It is true that humans have a material aspect as individuals, but science may alienate them unless we value the relationships among humans. Therefore, doctors, especially those specialising in biological medicine, should deconstruct the idea that biological science is the centre of medicine. Studying the establishment of good relationships between patients and doctors, in addition to studying molecular biology, is crucial.
Medical education has been changing, and my medical university started an interdisciplinary educational programme titled ‘Professionalism and Behavioural Science’ in 2015. I hope that the method of incorporating patients’ perspectives into medical practice will be widely known among medical students, so that they will not have the same problems and have better relationships with their patients.
Reference
Dr Koichiro Yamamoto, M.D., Ph.D. Department of General Medicine, Okayama University Hospital, Okayama, 700-8558, Japan
6th March 2024
